Are you a Bad Woman?

"Are you a bad woman?" Is what Julianne has been asking random strangers lately.  In line at the grocery store, at restaurants, hospitals, you name it, she's on a mission to find the bad women.  Why, you ask....well, one day, we were in the craft section of Wal-Mart and Julianne kept running to the end of the aisle while I was looking at what I needed.  So I told her, "Julianne, if you can't stay right by me you're going to have to get in the buggy." In typical Julianne fashion, she responds, "Why?" So I told her "Because someone could grab you and take you away from me." What does she do next? Again, in typical Julianne fashion, she walks up to a lady near us and says, "If I run away from my mommy are you gonna take me?" The lady had the best response, "YES I WILL! Because I'm a BAD WOMAN." I think Julianne was stunned!! Ha ha! It was pretty funny.  Of course now I find myself explaining to strangers all over Zachary and Baton Rouge that it's not that they look like a bad woman (especially if she happens to ask a man, as she did at a restaurant recently) its because of the Wal-Mart incident. The "bad woman" at Wal-Mart did reveal to Julianne, before she left our aisle, that she was not going to take her.  She had her own grandchildren. :-)

So, it's been a long time since I've posted just a regular update.  We left off with our trip to Disney World in SEPTEMBER! Wow...it's been a while.  Here's what's happened since. 

Halloween 2011

Thanksgiving in Forth Worth with Kent's family

Pumpkin Patch in Lafayette

Our last Christmas tree EVER from the "Christmas Forest" (they closed)

Decorating the Christmas tree

Inspired by another heart family friend, making a birthday cake for Jesus...Red Velvet!

Annual visit from Santa! 

We don't do "Santa" on Christmas morning, but he always stops by!

Just being Julianne.  I  mean, why not wear a mask, dressed as a 

Saints cheerleader and carry around two clown fish?

Spreadin' out in her BIG GIRL BED!

Heart Walk 2012

Doing magic tricks in the backyard

Easter 2012

Such a beautiful little lady

Park time!

Enjoying the wonderful weather we've had!

That's the last 6 months in pictures.  Julianne is doing pretty well on the new med.  She hasn't had any breakthroughs that we know of.  She had an appointment this week and things seemed good.  Julianne will go back to the Cardiologist on May 2nd for a Holter monitor. I asked about whether this is a good long term solution or if a pacemaker is still on the horizon.  Julianne's Cardiologist said we need to look at the Holter before he can address that.

In November, Julianne started two new things.  She started seeing an additional therapist and began seeing an Endocrinologist. First the Endocrinologist... You may or may not have noticed that Julianne is pretty short for her age.  She's below the 3rd percentile. This wouldn't be as concerning if she'd always been small for her age, but she hasn't. At 4 years old she was 36 inches.  At 3 years old she was 36 inches.  She used to be in the 50-75th percentile for height.  So, he ordered various labs and the only thing of any significance was her growth hormone levels being in the very bottom of normal.  For now, he wants to just wait and see if she's grown since her appointment in May.  We are really praying that she will grow! Neither of us want to put her through an injection every night for growth hormone therapy. I think if that is recommended, it will be a VERY tough decision.  Please pray that she grows.  I've measured her at home and I think she's grown about 1 inch...I hope that's enough. I will update after her appointment in May. 

The additional therapist is focusing SOLELY on feeding. Its been about 5 months since she started seeing Julianne. She's done REALLY well! Even the therapist has commented that she's made much quicker progress than she expected.  In fact, she is TAKING BITES OF CHEESE PUFFS AND CHEWING THEM!!! CHEWING!! Wow...can't believe I just typed that.  Now, she doesn't just pick up a cheese puff and eat it.  She only does it if we tell her to, or offer some reward, but hey, we'll take it. :-) Is there, perhaps, a light at the end of this tunnel? Or maybe a sandwich? It sure does seem like it.  I'm so so so so thankful for this progress.  We have prayed for and worked toward this for so long. Its just amazing to watch. I know she still has a long way to go and it may be years before she's eating entire meals, but it still makes us really happy. 

That's what's up. We are doing really well, and have no room to complain. We are so grateful for your prayers and love for our family.  It's more than we could ever ask for. Once, during a garage sale we had, a family walked up and I said, "Good Morning, how are y'all today?" The dad responded, "Better than we deserve" (I later found out that they had a "home church" for Vietnamese believers in their house)  His response has stuck with me.  I'm continually blown away by the blessings in our life.  We are so undeserving and unworthy of how God loves us, AND it's even enough to offer us a promise of eternity.  So, how are we doing? I would have to say, much better than we deserve. :-) Thanks for checking in!

Home Again

So, Julianne was discharged! We're back home and she's doing really well. The new med, Diltiazem, seems to be working well so far. She goes to the Cardiologist office on Friday for an EKG and then will see her Cardiologist again next week. The issue for Julianne is finding a drug that will control her SVT while not making her baseline heart rate too low. Last time she was on Verapamil for 10 months before it started making her have low heart rate episodes and that's how she ended up in Boston last year for a pacemaker. Since she never actually got the pacemaker that is still a possibility, but we're going to see how she does on this med first. She gets it every 6 hours, so we set the alarm to get up and give it during the night. Its kind of reminiscent of the old days of 2AM feeding bag changes. :) Its a small price to pay to have her home and healthy!

Thank you so much for your prayers and encouragement. We're very thankful that this was a quick stay and relatively uneventful....well, more uneventful than usual anyway. :)

SVT

I'm updating from my phone so this will be short.

7:20 AM julianne wakes up and can barely walk she's so tired. Just lies on the floor. We check heart rate, seems normal at first then shoots up to 215 BPM

7:30 AM called dr. Office and started getting ready to head to ER

7:50 AM back to normal, now just going for appointment @ dr office

8:15 AM 200 BPM again

8:20 AM coughs and HR goes back to normal

8:25 AM 200 BPM again...coughing won't break it this time

9:30 AM caught 4 seconds of SVT on the EKG

10-ish until about noon in PICU constantly in and out of SVT. Finally gets IV access with and EJ line after 6 tries :-( julianne was just so scared....heartwrenching as always. :'(

Noon till 3 continuously in SVT. Admitted to PICU. Heart rate over 200

3:00 pm gets first dose of new med Diltiazem and HR immediately goes back to normal. She's like a different kid! Happy (but still scared) again. :-)

Since then she's done fine. The med seems to be working. We need to make sure its not going to make her HR too low though. That has been a problem in the past. She enjoyed some visitors, phone calls and Skype sessions and is already wanting to go home.

Please pray for our sweet baby! Pray that all of this can be resolved relatively easily and that she will be healed physically and emotionally very quickly. Thank you so very much! We know that whatever the situation, God is taking car of our sweetums and us and that makes all the difference in the world. :-)

Julianne Sings a Solo

Today I'm preserving a precious memory in my mind. Julianne sang her first solo at church with her Daddy. It filled my heart with joy and my throat with a big, fat lump. She sang Laura Story's "Blessings". What a perfect song for our sweet girl, "what if trials of this life, the rain the storms the hardest nights, are your mercies in disguise." We are ever thankful that God has allowed us to have such precious times with Julianne. :)

Oh! And notice at the beginning how everyone claps when she first walks to the microphone...she's got something to say about that. :)

Heart Walk T-Shirt Update

We now have Youth Extra Small and Small available!!!

Please make sure all orders are submitted by tomorrow, March 7th. You can leave a comment here or email me: jessicacaperton@yahoo.com

Sizes: Youth XS - Adult XL $10

Adult 2XL-3XL $12

And don't forget to join the team here!

Heart Walk Time

It's Heart Walk Time again! We are raising money for the American Heart Association and would love for you to join us. We've joined forces with one of Julianne's sweet heart friends, Emma Kate and we'll be walking at the LSU Old Front Nine on Saturday, March 24th at 8AM. We'd love for you to join our team in person or in spirit!

You can join, contribute or both here: JOIN OUR TEAM

You may remember that Julianne was actually part of a study funded by the American Heart Association about 2 years ago. This study will benefit little heart patients just like Julianne! We love that the AHA has become personal to us and we hope that it has a place in your heart too.

We also have t-shirts available for our team. Sizes available are Youth Medium through Adult 3XL. Youth Medium through Adult XL are $10 each and 2XL and 3XL are $12. I need to send in our final count on Wednesday, March 7th, so please let me know before 4PM on Wednesday or I won't be able to order you a shirt. Any proceeds will be donated to the American Heart Association. Check out the design below:

Front Chest

Back

We are really looking forward to the 24th and hope that you will join us in supporting the AHA by joining our team or making a contribution to the American Heart Association!

P.S. Julianne update coming soon. :)

Disney Pictures (FINALLY!)

Well, well, well, look who took way too long to post pictures from Disney World! Me! Better late than never I guess. Plus, not posting these pictures has been holding me up from posting Halloween and Thanksgiving pics!

First, a little about our trip:

It was AWESOME! I really feel that we couldn't have gone at a more perfect age for Julianne. She truly believed that was the actual Mickey Mouse, Minnie Mouse, Ariel and on and on. It was such a special week, I get emotional just watching the slideshow. My parents, Kent's parents, my sister, my brother and my Aunt Suzette all joined us at the most magical place on earth!! FYI...the slide shows are kind of long. You didn't think I'd just post "a few" pictures, did you?

The first night we just went to the Magic Kingdom for a little while. On Day 2, we went to Breakfast at the Cape May Cafe where Donald Duck forced Julianne to hug him and her fear of costumed characters was permanently erased! Ha ha! I sure was happy about that one. At this restarant and every sit-down restaurant we visited, the chef would come out and find out what Julianne wanted, then would go back and puree it! They're so wonderfully, accomodating! We spent the rest of the day at the Magic Kingdom, where Julianne fell in love with the spinning Tea Cups.

Day 3, we went to Epcot and she got to see more Characters, celebrate Papa's birthday (my father-in-law) and ride the Finding Nemo ride (another favorite). Later that evening, we went to Mickey's Halloween Party. SUPER FUN!! If you are at Disney World in Sept/Oct, you should definitely go. Julianne dressed as Toodles and had a great time! She really, really wanted to see the Queen of Hearts and WE FOUND HER at the last minute! Perfect. :)

Day 4, We had Breakfast at Donald's Safari Breakfast and spent the day at the Animal Kingdome where (thanks to some special friends) Julianne had VIP seating for the Lion King show and Nemo the musical! It was so special! Both Julianne and Papa got to be a part of the Lion King show!!! Both shows were BEAUTIFUL!

Day 5, we spent the day at Hollywood Studios and then had dinner at Cinderella's Castle. We ate there for the first time on our last trip to Disney World (almost 5 years ago) and now it's a must. So "magical"! Even I felt like a princess!! All of the major princesses were in attendance!

Day 6, we celebrated Julianne's birthday with more park time and dinner at Chef Mickey's! Oh, I should also mention that Julianne was given a birthday cupcake every time we ate dinner. We'd all sing happy birthday and she'd say "NOW I'M 4!!" and we'd say, not yet. Finally on the 6th day she was 4!! Mickey helped her blow out her birthday candles. :)

Day 7, we went back to the Magic Kingdom for more and more and more tea cup rides and finished out our trip with dinner at the Garden Grille with the much awaited Chip and Dale!

It was a beautiful, unforgettable, magical week. Julianne's far and away favorites were seeing all her "friends" (the characters) and the tea cups and carousel! I'm so grateful for the blessing that this trip was for our little princess. To us, it was not just about celebrating her birthday, but about celebrating all that God has carried her and us through over the last 4 years. I think it was everything she dreamed of. :) Like I said, I still get emotional about it!

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